Tales of life and love with Endometriosis.

How I get by with my endometriosis (with a little help from my friends).

While endometriosis clearly has many evil powers (being the super-villain that it is), for me the worst is the way that it can make you feel totally lost and alone. Like you have this terrible burden to carry that nobody else cares about or understands. I’ve always been a pretty sociable person with a close network of family and friends, so I’ve been pretty amazed at the extent to which my endometriosis diagnosis has tested and strained almost all of my relationships.

For about six months after my laparoscopy I shut myself away from the people around me, and was feeling some pretty complex things that I never would have expected of myself. This is hard to admit, but I resented my friends for their healthy and care-free lives, for having no barriers to their future hopes and dreams, and for showing what I deemed to be a lack of interest and what I was going through. So I didn’t want to be around them and I stopped going into the office or attending social events. I just felt angry all the time.

About five years ago a close friend of mine was diagnosed with a brain tumor, and I couldn’t help comparing the support and sympathy she received for years afterwards with my own situation. That is so terrible isn’t it? She had many visitors in hospital and during in her recovery, loads of cards and messages of support, and unwavering understanding from her employer. I visited her loads of times, sent loads of post, made her CDs of her favorite music for her chemo sessions, and drove her around as her license was revoked. I even ran Cancer Research’s Race For Life for her- and I bloody HATE running! She has made a full recover now and is back to living her normal life, which is so great.!

In contrast though, I received no cards when I was diagnosed, or visitors, or people asking me about my condition when I bumped into them. It was like my world had crashed and burned, but nobody had noticed or cared. They all just carried on with their lives as if everything was normal. Cancer friend never event sent a text. Funnily enough I stumbled across this article by Nicole Milachi (who co-founded Endo Worriors), and she articles this issue so much more eloquently than I can. It’s not like I don’t want other people to have no sympathy, its just that I feel that if endometriosis were more well known, we might have had people rally around us more. Unlike my friend with cancer, who was lucky, I am never going to get better or win this battle. That’s not easy and deserves some sympathy right?

But over the past few weeks I’ve made some pretty good progress in this area, and am starting to feel much happier than a while back when I wrote this letter to my friends that I knew I would never send. It’s all down to Endometriosis Awareness Week actually that I decided to get pro-active. I started to tell some of my story on my Facebook, to raise awareness mainly, but also because I was feeling ready to get my experiences out into the world instead of hiding away. I wasn’t anticipating any particular response, but the one’s I’ve had have been really overwhelming and touching. I had lots of private messages of people sharing their own experiences, and saying they had been reading the links I’d posted and found them interesting. Other people left lovely comments on my posts which shows that actually, when you reach out, people do care. Quite a few others shared my posts onto their own accounts. My fiance’s best-friend, who is a ”typical bloke” even left this response which brought a small tear to my eye, and there were lots like this:

I also received some amazing surprise post for the first time since my diagnosis, in supportive anticipation of my hospital appointment. Stuff like that means more than I think the sender knows. Just knowing people really are there if you need them, and that they care about you really helps and gives you a reason to battle on. I was so down when I arrived home from the hospital, and having a big box of chocolate and card waiting for me really lifted me up. Also, that card is genius!:

Best post ever! Sometimes you just need to be told you are doing OK.

These kind actions from some of my friends have led me to reflect on the other things that people do for me in my life. My mum and dad are always there to listen to and encourage me, and my mum copes so well with me phoning her in tears ALL THE TIME. That can’t be easy. My fiance is just so amazing in his unwavering support and I know how lucky I am to have someone who is willing to put up with and look after me every day. My friends can be really great when you ask them for help or advice, and I know that they want to be there for me but struggle to know how to be. And then I have one friend in my life who always goes the extra mile. After I was diagnosed she went out and bought some books on endometriosis so she could understand what I’m going through and how to support me, which I just thought was the best thing ever! Just having one friend like that is something to be truly thankful for.

So I will now do my best to stop moping about being alone, because clearly I am not. If you’re a bit of a type-A perfectionist like me your natural response will be the need for everyone in your life to be supportive and understanding, but that just isn’t realistic or possible. And I suppose I’ve learned that you can’t expect people to be psychic and understand what you’re going through if you don’t tell them. My advice for women with endometriosis feeling lost and alone would be to identify who is most likely to be supportive and to confide in them. And when you’re ready share your story with the people in your life if you feel comfortable and able to. They will be amazed at what you’ve been through and will think you’re ”a total bad-ass” as one of my colleagues put it the other day!

Because when we hide away, and get lost on our our own, we let that super-villain win. And we just can’t ever let that happen can we?! 🙂

I’m keen to hear about how well supported you feel by friends and family? Do you prefer your privacy or are you a sharer? Has compassion-fatigue set in? Or do you have any tips about talking endometriosis with non-sufferers?

7 thoughts on “How I get by with my endometriosis (with a little help from my friends).”

Claire, i know exactly how you feel. I wish i had support and people checking on me. I remember waking up from lap(getting a dermoid removed) and my dad asking the nurse how long was it going to take me to wake up. That i sleep all the time and that this is probably me just being me… Nope it was me trying to wake up from anethesia!! And my mom telling me having endo is my fault. And i need to see a dr to make sure im not lying. And getting yelled at by my dad for taking daily meds. I tried talking to my best friend but she argues with me about treatments when she doesny even understand anything or wants to try n understand. She thinks she knows it all. So i dont talk to anyone about anything except on my blog. The support i recieve is any warm comments on my posts. So you may not have got get well cards, or hospital visits but you have a mom you can call. You have a special someone by your side through all of this. It may not seem like much support compared to your friend that had cancer but it is more than some of us have. So please take comfort in that 🙂 also that was a very sweet comment your fiances friend left!

Hi,
Thanks for your message. I’m so sorry that the people around you aren’t more supportive- that really sucks and makes a crappy situation feel even worse 😦 Yay for social media though- I’m so pleased you’ve found some support and comfort online. I think my blog and twitter have got me through some of my toughest times too. I will have to check your blog out. If you ever need to talk/ rant/ cry you can always message me on here or tweet me if you’d like to. 🙂
I know I am lucky, I just think I needed to pull myself out of the self-pitying hole I was stuck in. Most of the stuff I post on here I wouldn’t dream of saying to my family and friends, I did try at first but they don’t really ‘get it’. So I decided that they can get the light version of everything, that way they are in the loop but not bogged down.
Anyway, please take care and do keep in touch.
Claire
xx

Yes im so thankful for social media lol. I love having a place to vent and get support. Im also on a couple endo groups on facebook. Always intresting to see what others post. See what struggles everyone is going through and help in any way we can.
Thank you i will definately stay in touch 🙂

You’ve touched on some brutal truths. My experiences have been similar. It’s difficult for some to accept the long-term nature of my condition. It’s not a heart condition or cancer so it’s not really bad. Right? It’s as if people’s expectation is that you may be ill but shouldn’t behave it or go on about it. Big sigh. It’s still very much a ‘silent’ disease. I’m lucky that, like you, I have friends who took the effort to research it and they understand how hard it can be for me sometimes. Lots of hugs.

Hi,
Thanks for your comment. I seem to have been conditioned to believe that when someone gets sick they are automatically lavished with attention, and chocolates, and flowers, or something. The constant disappointment that this hasn’t happened has aged me! 🙂
I’m slowly getting to grips with all these obstacles we all seem to come across on this damn endo journey. I think it has taught me what (and who) are important in my life, but we are lucky to have at least some people be there for us. Hope you are OK!Claire
xx